This April, we launched the #BOSAware campaign to raise awareness for Bohring-Opitz Syndrome. We had people from all over the world participate by posting pictures with the #BOSAware hashtag, along with events to commemorate the day.
But what does it really mean to be BOS Aware? It isn’t just sharing pictures or wearing gold and navy, although those are very visible ways to show your support. Spreading awareness is also sharing your story with geneticists or other medical professionals, hosting a fundraiser to raise money to go towards research, writing a blog post about your journey, or lobbying to make changes in laws regarding rare disease. These are just a few ways to be involved in raising awareness for BOS.
We would like to hear from our BOS community on what it means to you to be #BOSAware, so we are starting a blog series featuring various people describing why they are #BOSAware in their own words.
Our first feature is Jill Morris and her son Vaughan who explain why they are #BOSAware:
"BOSAware for us means many different things. It means bringing the knowledge of Vaughan's condition and all those who have BOS or who are affected by it, to the forefront. Whether it be doctors, researchers, therapists, politicians or even people in our community and educating them on what it is and how it impacts our lives. It also means advocating for acceptance and understanding of not just those with BOS, but with those with differing abilities. That those living with disabilities are important members of society and have many valuable contributions to make to the world we live in. Just because someone can't do something or doesn't do something the same way others do, doesn't mean that they aren't important or that they can't make the world a better place."
- Jill Morris
Jill has spread awareness for BOS on Capitol Hill during Rare Disease Week and shared their story with the Warrenton Lifestyle Magazine in May 2017. We appreciate Jill and Vaughan for all the do for the BOS community!
If you would like to submit why you are #BOSAware, please contact firstname.lastname@example.org.